Today is the world of the internet and technology. Yet, there is no surprise. Rare disease patients are struggling with job options in the country.
Life is at stake with the struggle being real to get the right rare disease diagnosis. There is a question about employment and job openings for people with rare diseases. That can't even be thought of.
There is the latest article published in 2022 by a research expert covering India.
It states that people who were graduates had the highest unemployment rate in India in 2021. It was about 19.4 percent.
Those who completed their 12th grade had an unemployment rate of above ten percent.
This trend continues, as the level of education reduced, the unemployment rate reduced.
People who completed high school had an unemployment rate of around two percent.
Those who had only a primary school education had an unemployment rate of just under one percent.
This is the scenario in India. Should it not be the other way round?
Shouldn't education make people independent and give them basic financial freedom?
If this is the scenario for normal people, what about rare disease patients?
There are enough limitations to question their abilities and expertise.
Shouldn’t they be able to work?
In this blog post, we will cover these.
What are rare diseases?
What are the most prevalent rare diseases in India?
What are the unique challenges that rare disease patients face when looking for jobs?
Do we have job openings for rare disease patients in India?
Is there financial help for rare disease patients in India?
Are remote jobs the new trend for rare disease patients in India?
Finally, what are the 10 best and easiest job options for rare disease patients worldwide?
WHO defines rare a disease as often debilitating lifelong disease or disorder. There is a prevalence of 1 or less, per 1000 population. There is however no universally accepted definition of a rare disease.
It is estimated that globally around 6000 to 8000 rare diseases exist.
The commonly reported diseases in the country include Primary immunodeficiency disorders, Lysosomal storage disorders (Gaucher’s disease, Mucopolysaccharidoses, Pompe Disease, Fabry Disease)
Small molecule inborn errors of metabolism (Maple Syrup Urine Disease, Organic Acidemias)
Cystic Fibrosis, Osteogenesis Imperfecta, certain forms of Muscular Dystrophies and Spinal Muscular Atrophy.
We have between 72 to 96 million people affected by rare diseases in the country.
There was a study conducted on Multiple Sclerosis (MS) patients, in the United States in 2018. The study said that 24 percent of those with the disease had to stop working!
This is the time for a change to come. It is now that the rare patients find a way out of this unemployment maze.
Rare disease patients are on the real job hunt!
There are challenges that rare disease patients encounter. This makes it even more difficult for them to commit to a job.
Some of the unique challenges that rare disease patients face are,
Lack of access to health care.
Lack of finances.
Lack of emotional support at home.
Inability / Difficulty to commute in some cases.
Frequent hospitalizations.
With all these going on, we do not have job opportunities for rare disease patients in India. This is true.
What if I told you that this problem has a solution?
Read further to know 10 different job options for patients with rare diseases.
In my experience in advocacy, I have never found a single job opening for rare disease patients.
There is financial help for rare disease patients in India. It can be looked for in the latest National Rare Disease Policy above.
However, the chances are bleak.
Very soon remote jobs will take over the world.
We, rare disease patients/advocates will be forced to work online.
We will be compelled to start a business online.
Here are the 10 best and easiest job options for rare disease patients in India and worldwide.
1) Content writer/Copywriter.
Content is there everywhere.
From your Instagram scrolls to the YouTube video trolls, we have enough content.
Surprisingly, we want more content.
If you know the basics of English and are good with your research skills, then this is for you
Trust me, when I say this. This is the freelancer’s generation.
Beginner friendly?- Yes!
Can it be learnt with time?- Yes!
Has a growth curve? Definitely Yes!
Skills required:
2020 analysis of content writing job postings say so. The skills required are social media literacy and leadership. They were mentioned in 49 percent of job offers.
Respecting deadlines and SEO followed, both with 44 percent.
2) Blogging.
Hear me out when I say this. Hear me out with your full attention.
The never-ending and ever-growing world of medicine needs you!
The need of the hour is to make you, a rare disease warrior, my rare friend start blogging.
It is high time you start documenting your journey with a rare disease on an online platform. It doesn’t have to be all big.
Start blogging today!
Listen to me when I say this, Blogs can be monetized.
Can it be learnt with time?- Yes!
Has a growth curve? Definitely Yes!
Skills required: Basics of handling a website and a blog, Search Engine Optimization (SEO).
Requirements: Laptop with a good internet connection.
Dedicated time to learn and write.
Simple basic English only.
3) Youtuber.
Gone are those days when you were working under someone for a job.
This is the video generation. Most of us, including you and me, are consumers of video content. You just can’t deny it here.
Here’s the thing, being your rare best friend I am telling you this.
Start a YouTube channel today. Now, you clearly do not have to go places to show your expertise. There is no such thing called a perfect video.
I want you to start making videos as simple as this. A day in my life, what I eat in a day, a day at the hospital, my travel kit, what’s in my bag, etc.
I have a list of video ideas for you, only if you are willing to follow!
Skills required: Basics of video shooting and editing.
I repeat you don’t have to be a professional video editor or have a high quality DSLR camera, to begin with.
You can shoot videos by sitting in the comfort of your home!
Why not give it a try?
Can it be learnt with time?- Yes!
Has a growth curve? Definitely Yes!
Requirements: Basic video-making and editing skills.
Knowing Search Engine Optimisation (SEO) is an add-on and is definitely a plus!
4) Online Tutor.
Let me tell you something. Pay attention because this can blow your mind.
Research says that the EdTech market size in India In 2020 was worth 2.8 billion. However, by 2025 the overall market size is expected to increase to 10.4 billion.
The Kindergarten to twelfth-grade market is expected to stay the most valuable. This is followed by the test preparation and online certification market.
Then, my dear rare best friend.
What’s stopping you from teaching online?
No, I don’t want to hear you telling me that you know nothing to teach people. The fact that you are able to read this blog post tells me that you can teach English reading and writing to people. Okay! To say the least at least primary school children.
Design an excellent portfolio.
Showcase your rare disease as your strength.
Show your expertise in one field. Grow your audience.
Jump on at the fact that the world is moving online.
Hear me out when I say this, your wheelchair will not be a problem anymore.
You don’t have to look for ramps in schools anymore.
All that you need is this,
Requirements: Laptop with a good internet connection.
Zoom to host virtual classes.
Trust me, the sky is the limit!
Go for it.
5) Social Media Manager.
Every brand needs to have an online presence.
Literally every brand I mean.
For social media management, I don’t tell you that you need to have a basic degree in communication. You don’t even need to have a degree in Social Media Marketing. Of course, they are all add-ons.
But, what you really need to have are these skill sets.
Being fond of social media, Instagram, and Facebook mainly.
Knowing how to use LinkedIn is a skill that can be a tie breaker!
Get a hang of using Canva for graphic designing. An eye for colour and design is a must!
You must anyway be knowing basic English to write really good captions.
Knowledge about SEO is a plus.
Laptop with a good internet connection.
A bit of a learning curve and experience should do good!
You can do this, trust me.
The scope is really good. Pay is decent if not super-high.
You can make it big if you are determined.
Remember that you can always plan your content ahead.
So there should be nothing that can stop you from making it big if you are willing to learn.
6) Graphic Designer/Logo Designer.
If you can generate logos that can speak for the brand.
If you are great with your colour choices and designing.
This is for you.
There are many courses online, or to break it even more for you. You don’t need to join an online course for this.
There are free videos that are available for you to learn on YouTube.
Practice. Get a hang of it and start your logo-generating business.
Remember, logos must be unique just like rare diseases!
7) Professional Photographer.
This is where you will be needing a professional camera.
You must be willing to commute to different places as per your client’s choice too. This can be a little technique-sensitive and needs a great learning curve. But, if you are interested in photography, if you can make wonders with candid shots, this is for you.
You can be a freelance photographer. Plan your events ahead!
That should get you going.
I would always recommend learning photography from a professional. This is a skill for a lifetime.
8) Video Editor.
Entrepreneurs don’t have the time. Or let me tell you the other way round. Even if they have time, they won’t be editing their videos!
At least, most of them.
This is where you can grab that opportunity.
Basic video editing doesn’t need much effort. Trust me, you can learn it all freely by only watching YouTube videos.
Video editing can make you rich. Trust me, when I say this!
Skills required: Can be learnt by watching YouTube videos.
Bonus Tip: You can edit small videos or Instagram reels on your smartphone too!
9) Author. If you are a wordsmith, having a taste of English Literature.
If you weave poems out of pain. Then consider documenting your life’s journey as a book. Write around 50,000 words and publish a book.
Gone are those days when you reached out to publishers. You were waiting for them to accept your manuscript. There is always a possibility of self-publishing today.
Give it your best shot.
Bonus tip: You get to choose your publishing company.
You decide the price for your book.
Remember, publishing a book on the Internet can get you, International readers, too.
10) Virtual Assistant.
By now, I know that you are experienced in managing your medical reports.
You keep separate files or folders for your test reports, doctors’ advice, and bills too.
Don’t you?
Stop smiling now. I have been there and done that too.
If the word ‘Organize’ makes you feel at home, then you can be a virtual assistant too.
I know that this field sounds like Latin and Greek to you now.
I would recommend getting an internship done to get you experience and then you are good to go!
You will be working with entrepreneurs and helping them organize their big day!
You will be a right-hand kind of person to your boss.
The best part is it can be done online.
Yes! You heard me right,
You can work in the comfort of your home!
Find out more about how to be a virtual assistant here.
No, this is not the end.
I will give you two bonus options too.
Voice-over Artist.
Get started with this by hosting your own podcast show.
Read how to start your podcast here.
This is not at all difficult. Trust me!
Social Media Influencer.
If you are someone with thought leadership, who can think of a rare disease as strength.
This is for you.
Start slow on any social media platform and build your audience.
This can be a hard nut to crack. If it does, then trust me, hear me out when I say this.
You will be a brand for yourself. You will have people working for you!
There will be a day when you have people working for you.
You only need to take a smart move, by using the power of the Internet, the right way!
Conclusion
Trust me, you aren’t alone in this battle.
Lastly, I can only say, sometimes the best ways are created. Created by rare people like you and me.
There is a road ahead filled with hope and light, only if you are willing to see it!
Sending you all the courage to get started.
Dr. Shyamala Peesapati.
The Rare World Official.
Check this blog post to know why I started blogging.
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Help us grow, share this blog post today.
😍very nice, its very much helpful to people.🤗